The Christie Charity
Press release posted 18 April 2024
A railway worker from Wigan in Greater Manchester, who discovered he had terminal cancer after suffering a bout of food poisoning, feared he wouldn’t see his eldest daughter get married or meet his fourth grandchild. However, thanks to taking part in research at The Christie NHS Foundation Trust in Manchester, he has lived to do both.
Terry Berry (61), who had been fit and well, made the shocking discovery he had cancer after he was hospitalised with food poisoning in May 2020. Despite having been given less than 12 months to live, the married father of 2 and grandfather to 4, is now enjoying life thanks to a new drug called ivosidenib (also known by the brand name Tibsovo) which has recently been approved for use on the NHS.
In May 2020, while in lockdown and just weeks into the pandemic, Terry, a Liverpool FC fan, was taken ill after eating a fish pie. After an ambulance took him to A&E, investigations found a parasite in his bowel. On scans doctors at his local hospital saw a shadow on his liver and discovered a 10cm tumour and he was diagnosed with cholangiocarcinoma, which is a type of cancer that forms in the bile duct of the digestive system. Unfortunately, it was inoperable.
With few treatment options available, Terry, who was 58 years old at the time, was referred to The Christie. He underwent chemotherapy as part of a clinical trial until March 2022, by which time his tumour had shrunk by almost a quarter and he came off treatment for almost a year and a half and his condition remained stable.
When the cancer started to progress and spread to his lungs, Terry was then offered the chance to participate in a second clinical trial for the oral drug ivosidenib, as his tumour had a mutation (IDH1) which meant he may benefit from this treatment at the National Institute for Health and Care Research (NIHR) Manchester Clinical Research Facility (CRF) at The Christie and started his first treatment in September 2023.
Ivosidenib is a first-in-class targeted therapy used to treat patients with bile duct cancer that has spread to other parts of the body or been previously treated. Doctors thought Terry might respond well to the trial drug as he’d had a liver biopsy which helped them understand his genetic makeup and identified he had an abnormal form of an enzyme called IDH1 (short for isocitrate dehydrogenase-1). The IDH1 enzyme plays an important role in making energy for cells. When the IDH1 enzyme is mutated, metabolic changes in the cell lead to the development of cancer. Ivosidenib blocks the mutated enzyme and may help slow or stop the cancer from growing.
Terry now takes 2 tablets of ivosidenib a day and his recent scan show the drug is keeping his cancer stable. Due to the disease, his weight dropped but he has got his appetite back and is now gradually putting on weight.
Talking about his experience Terry said: “I had chemotherapy for about 15 months. It was so tough I eventually told doctors I couldn’t take it anymore. So, in February 2021, my eldest daughter, Carla, brought her wedding forward a year and got married during lockdown with just me, my wife Elaine, and her husband-to-be’s parents in attendance. They weren’t even allowed to have their own children there. They made that incredible sacrifice to allow me to give her away.
“My youngest daughter, Nicola, was 7 months pregnant when I was diagnosed, and I really didn’t think I’d get to meet Archie but he’s now 3 years old and every moment with him is precious.
“Elaine has been fantastic and even threw a 60th birthday party for me a year early because we were so sure I wouldn’t make it to that milestone. I’m still not back to my former self, and life is far from what it was. I have good days and bad days, but this drug is far kinder to the body than chemotherapy, and I’ve been lucky that I haven’t experienced too many side effects. Thanks to these tablets, Elaine and I celebrated our 40th wedding anniversary last year and we can enjoy weekends at our caravan in Garstang with the family.
“I would say to anyone, if you’re offered a clinical trial, go for it and don’t be frightened. On the trial I’ve been very well looked after by a fantastic team, closely monitored and there’s always someone at the end of the phone if needed.”
Dr Mairéad McNamara, consultant oncologist at The Christie said: “Fortunately a liver biopsy had been taken when Terry was first diagnosed so this could be used for molecular profiling and it was discovered that his tumour had the IDH1 mutation, so he could be treated with ivosidenib. This is an example of how it is possible to personalise treatments for patients rather than use the traditional ‘one size fits all’ approach, which can potentially lead to better results. Clinical trial evidence shows that ivosidenib can potentially extend lives while offering a good quality of life and delay the progression of cancer.
“A vital part of research is to identify improved targeted treatments, and without the help of patients like Terry, this wouldn’t be possible. It is great that this new drug is now available on the NHS for patients with bile duct cancer who have the IDH1 mutation, so that more people like Terry can potentially be helped.”
Bile duct cancer (also known as biliary tract cancer) is a rare cancer, with a poor prognosis and around 1,000 people are diagnosed with it every year.
Any patients interested in taking part in clinical trials should discuss this option with their consultant or GP. Not all patients will fit the criteria for a specific trial. While clinical trials can be successful for some patients, outcomes can vary from case to case. More information about taking part in clinical trials can be found on our taking part in studies and trials page.